Anyone deal with Weight Gain after transplant? Any suggestions?

Posted by mandaaddams @mandaaddams, Jul 28, 2022

Hi, I'm new here. I recently was a patient of UCLA RONALD REAGAN and endured liver/ aortic valve transplants performed at the same time at the beginning of this year. I was very ill, and UCLA was the only hospital in the States up for attempting the surgery. I was airbussed out to California from Texas. I had been at University Hospital in San Antonio. Long story short-ish. I'm doing very well, praise the Lord God Almighty! I was given a very small percentage to live… It's always slightly terrifying when your lead Surgeons tell you it's a long shot, but if they were willing to take a chance, so was I!

Question. When I was released in March I weighed 84lbs. I'm 5'6" and have gains about 17lbs. I know this sounds ridiculous. But I feel large and am afraid of getting any bigger because I've maintained such a small frame for the past 4 years while being ill. I don't think I'll have the strength needed to support more weight. I've read some of us suffer from obesity from medications. Any suggestions, thoughts, comments, even a, "you're being ridiculous" comment is welcome. I was pushed to gain weight at the beginning and I'm afraid I may have gained it too quickly. Thanks in advance for your time and thoughts. I hope you are all well and I will be send out prayers for all of us. Stay strong!

Interested in more discussions like this? Go to the Transplants Support Group.

I am 5'7" and was down to 97 pounds before having my bilateral lung transplant in May. I have put on over 20 pounds since. My doctor had me drinking 4 high protein shakes a day at first then reduced to 3 shakes a day and now I no longer am required to drink them since I am able to eat a full meal now. I understand the concern of gaining too much weight. However, it seems your BMI is still too low and your doctor is probably saying that you need to gain more. Look at serving sizes and try to eat balanced meals.
Due to the meds, I have an issue with my sugar being too high, so I need to try to keep to 3 meals a day. If you don't have the same issue with sugar, you may be able to eat 6 smaller meals a day.
I started walking before leaving the hospital and going up steps (I live in a house with stairs). I am now up to walking a little over 4 miles a day. I am also doing arm exercises. I needed to build back up muscles since I was considered under weight and protein deficient. I am not sure if you have the same issue with your muscles, but if you start out slowly you can build back up the muscles. Between exercising and healing from the surgery, it burns more calories.

REPLY

Welcome @mandaaddams. I'd like to add my welcome along with @chickytina.

It sounds like some of this weight gain would be welcome to help you gain strength and muscle mass, but you're concerned that it happened too quickly and not in a healthy way. Manda and Tina, have either of you worked with a transplant nutritionist?

REPLY
@chickytina

I am 5'7" and was down to 97 pounds before having my bilateral lung transplant in May. I have put on over 20 pounds since. My doctor had me drinking 4 high protein shakes a day at first then reduced to 3 shakes a day and now I no longer am required to drink them since I am able to eat a full meal now. I understand the concern of gaining too much weight. However, it seems your BMI is still too low and your doctor is probably saying that you need to gain more. Look at serving sizes and try to eat balanced meals.
Due to the meds, I have an issue with my sugar being too high, so I need to try to keep to 3 meals a day. If you don't have the same issue with sugar, you may be able to eat 6 smaller meals a day.
I started walking before leaving the hospital and going up steps (I live in a house with stairs). I am now up to walking a little over 4 miles a day. I am also doing arm exercises. I needed to build back up muscles since I was considered under weight and protein deficient. I am not sure if you have the same issue with your muscles, but if you start out slowly you can build back up the muscles. Between exercising and healing from the surgery, it burns more calories.

Jump to this post

Sounds about the same problem I'm having. I'm walking up to 3 miles a day and stairs, as well. I'm getting stronger. I wasn't able to walk, I have to relearn a couple of times. I no longer need a walker, much less a chair. I'm moving quite a bit. My back is still very weak. I guess that's why I'm concerned about gaining the weight.

REPLY
@colleenyoung

Welcome @mandaaddams. I'd like to add my welcome along with @chickytina.

It sounds like some of this weight gain would be welcome to help you gain strength and muscle mass, but you're concerned that it happened too quickly and not in a healthy way. Manda and Tina, have either of you worked with a transplant nutritionist?

Jump to this post

Yes, I have, they're thrilled and want me to gain more weight, but I don't think I'm comfortable with that. My diet is pretty restricted but, I've found a balance. I wish I could have more leafy greens and fruit, but there are a lot of them that I'm not allowed to eat. Before I got sick my normal weight was 145lbs. Then the cirrhosis set in and I ballooned to 170. Lowest weight was 76lbs at my worst in the hospital. I was mid 80's upon release and am now 98-102 it varies. All of my labs come back great, and I hadn't had a period in 5 years pitying me at 35 years old and 150 lbs. I thought I was done, because my mom went through menopause around 40. Last month it showed up again, meaning I must finally be healthy enough to produce it. I dunno, just strange questions. I know everyone's experience is different. Thanks for the follow up, though! And, thanks for your input with your experience @chickytina Be well and God bless!

REPLY

@mandaaddams, Welcome to Connect. I had a liver and kidney transplant in 2009. I am reading that you and I have a few things in common – I was transported by air to Mayo Rochester. I had to use a wheelchair and a walker. And I had to gain weight.
I was skin and bones after my transplant when all of the ascites and edema were gone. I needed to gain weight and to regain my muscle mass that had been lost during my long period of inactivity. I had no problem eating after my transplant because my sense of taste came back, I was no longer nauseous, and my dialysis diet was eliminated!

I transplanted in the month of April and my walking was unsteady. and my energy and stamina low. I had to buy clothes that were smaller than I had in my closet. 4 months after my transplant, our son got married. I remember being too thin because it hurt to sit in a hard church pew for the ceremony!
My post transplant check-up was delayed until after the wedding. One of the appointments that was scheduled for me was a consult with a transplant nutritionist. She sat down with me helped my to adjust my food preferences to create a workable diet that was healthy and that worked for me. I think that the goal is to eat the right things to rebuild your muscles and provide the nutrients that your body is going to need now and in the future. If you can connect with a transplant nutritionist, I highly recommend you do it.
Will you travel back to California?

REPLY
@mandaaddams

Sounds about the same problem I'm having. I'm walking up to 3 miles a day and stairs, as well. I'm getting stronger. I wasn't able to walk, I have to relearn a couple of times. I no longer need a walker, much less a chair. I'm moving quite a bit. My back is still very weak. I guess that's why I'm concerned about gaining the weight.

Jump to this post

I walk with my husband, which has brought us closer since we are discussing so many things during our walk. We also try to go different ways so that we can see different things. We have learned so much about our neighborhood. Usually we are driving from point a to point b, so we don't notice things as much. Even going the same streets we are able to notice different things like what is happening in people's gardens.

REPLY
@mandaaddams

Yes, I have, they're thrilled and want me to gain more weight, but I don't think I'm comfortable with that. My diet is pretty restricted but, I've found a balance. I wish I could have more leafy greens and fruit, but there are a lot of them that I'm not allowed to eat. Before I got sick my normal weight was 145lbs. Then the cirrhosis set in and I ballooned to 170. Lowest weight was 76lbs at my worst in the hospital. I was mid 80's upon release and am now 98-102 it varies. All of my labs come back great, and I hadn't had a period in 5 years pitying me at 35 years old and 150 lbs. I thought I was done, because my mom went through menopause around 40. Last month it showed up again, meaning I must finally be healthy enough to produce it. I dunno, just strange questions. I know everyone's experience is different. Thanks for the follow up, though! And, thanks for your input with your experience @chickytina Be well and God bless!

Jump to this post

I think the diet might be different for a lung transplant (not sure). Even though it is restrictive there are many things that I like that I am still able to eat (especially ice cream). I have to watch out for too much potassium while trying to increase my magnesium (even though I take 6 pills a day to raise the magnesium, the level is still low). At least I am able to eat again. While in the hospital, I was given nutrition straight through a central line at first.
Like Rosemary, I had the issue of sitting due to my tailbone sticking out. I had been in a wheel chair for about five months before the surgery plus needing oxygen progressively increasing until I got up to 30 liters upon being admitted to the hospital. I had to use a walker for the first week after surgery (partially to hold the drainage [I had 4 chest tubes], all of the monitors and sometimes an IV, as well). After the surgery, I had over 40 pounds of fluid, but it was all in my legs (my son wanted to pop them with a pin). Due to having A-fib, I wasn't allowed any diuretics.
I bought an eggcrate pillow to sit on the couch and had taken the cushion from the hospital to sleep on. When I first came home from the hospital, I had to try to sleep on my back. It hurt too much to go on either side and definitely couldn't lie on my stomach (the incision from the surgery is what they call a clam shell, they break the breast bone and open the ribs horizontally, as if a clam opening. The scar runs from underarm to underarm under my breasts). I also have to sleep with my feet up due to the swelling (my feet still swell up during the day, but not enough most of the time for compression socks).

REPLY
Please sign in or register to post a reply.